Matt vs Myeloma vs Next Up

Wednesday, March 14, 2018

I no longer work, but I did work for over 6 years while managing my disease. For a while, I had some real challenges with human resources. It was maddening, annoying and scary. Maintaining insurance was a huge motivation for working. I learned a bit about a cancer patient's rights in the work place. In this regard, below is a link for what, I am sure, will be an informative and helpful webinar:

Friday, February 23, 2018

What you are looking at is $14,000 which is the cost of one bag of darzalex. Imagine if a myeloma patient couldn't get insurance because they were denied coverage due to a pre-existing condition or if their out of pocket cost was some huge number. This is one reason why the Affordable Care Act is so important. When I stopped working, I was allowed to keep my insurance provided I pay the entire premium. Not cheap, but definitely worth it. Fortunately I am getting premium assistance from the Leukemia & Lymphoma Society and co-pay assistance from Janssen Oncology, the maker of darzalex, has a co-pay assistance program. Thank you LLS and Janssen.

Recovered from flu. I had to skip two weeks of treatment. I'm on maintenance, so I do darzalex once every four weeks. Missing two weeks means it's been 6 weeks since last infusion. But today I'm back it. We did labs earlier in the week and myeloma numbers look tremendous. Note I also take 1 mg of pomalyst for 21 days followed by 7 days off. Again with rhe flu, it' s 3 weeks since last pomalyst.

Note that darlazex is infusion and pomalyst is oral. With darzalex once I hit my insurance out of pocket payment, I pay nothing. Pomalsyt, while it is chemo, is treated as any other prescription and doesn't count against my out of pocket budget. So when folks discuss parity for oral chemo, this is what they are talking about. Oral chemo is fucking expensive and can bankrupt folks. I'm fortunate that a} I get copay assistance and b} I have good insurance that pays for the majority of my prescriptions costs. Nonetheless, it aint cheap.

Also, I got a call from my dermotolgist the other day, regarding the warts on my fingertips. My immune system is fairly taxed and things like warts and skin cancers is a never ending fight. We've tried several topicals to deal with the wart and they just keep coming on back. But the dermo read about a treatment that has been successful in keeping them away. I started this yesterday. I sit for two hours with a powerful ointment followed by 4 minutes under a powerful led light that activates the ointment. I'll do this monthly and see where it gets. I did my first light treatment yesterday and for the following 48 hours I need to wear gloves when outside, otherwise the sun will reactivate the ointment and it will burn like heck. After 48 hours I'll be good without gloves.

I no longer work, but I did work for over 6 years while managing my disease. For a while, I had some real challenges with human resources. I...

My Multiple Myeloma Story

On May 2, 2011 I was diagnosed with Multiple Myeloma. I had never heard of it before but know all about it now. It's a bone marrow and blood cancer. I began chemotherapy on May 3. I created this blog to keep folks up to date with my health, my treatment, and my adventure.